A biopsychosocial network model of fatigue in rheumatoid arthritis: A systematic review

Fatigue in RA is prevalent, intrusive and disabling. We propose a network model of fatigue encompassing multiple and mutually interacting biological, psychological and social factors. Guided by this model, we reviewed the literature to offer a comprehensive overview of factors that have been associated with fatigue in RA. Six categories of variables were found: physical functioning, psychological functioning, medical status, comorbidities and symptoms, biographical variables and miscellaneous variables. We then systematically reviewed associations between fatigue and factors commonly addressed by rheumatology health professionals. Correlations of fatigue with physical disability, poor mental well-being, pain, sleep disturbance and depression and anxiety were ∼0.50. Mostly these correlations remained significant in multivariate analyses, suggesting partly independent influences on fatigue and differences between individuals. These findings indicate the importance of research into individual-specific networks of biopsychosocial factors that maintain fatigue and tailored interventions that target the influencing factors most relevant to that person

Fatigue in rheumatoid arthritis

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Fatigue in inflammatory rheumatic diseases: Current knowledge and areas for future research

Fatigue is a complex phenomenon and an important health concern for many people with chronic inflammatory rheumatic diseases, such as rheumatoid arthritis, psoriatic arthritis, primary Sjögren syndrome and systemic lupus erythematosus. Although some clinical trials have shown the benefits of cognitive behavioural therapy in fatigue management, the effect of this approach is relatively modest, and no curative treatment has been identified. The pathogenesis of fatigue remains unclear. Despite many challenges and limitations, a growing body of research points to roles for the immune system, the central and autonomic nervous systems and the neuroendocrine system in the induction and maintenance of fatigue in chronic diseases. New insights indicate that sleep, genetic susceptibility, metabolic disturbances and other biological and physiological mechanisms contribute to fatigue. Furthermore, understanding of the relationships between psychosocial factors and fatigue is increasing. However, the interrelationships between these diverse mechanisms and fatigue remain poorly defined. In this Review, we outline various biological, physiological and psychosocial determinants of fatigue in inflammatory rheumatic diseases, and propose mechanistic and conceptual models of fatigue to summarize current understanding, stimulate debate and develop further research ideas

Rheumatology clinicians' experiences of brief training and implementation of skills to support patient self-management

Background: Self-management of arthritis requires informed, activated patients to manage its physical and psychosocial consequences. Patient activation and self-management can be enhanced through the use of cognitive-behavioural approaches, which have a strong evidence base and provide insight into the variation in outcome of patients with ostensibly the same degree of disease activity. However, training for rheumatology health professionals in theory and skills underpinning the facilitation of self-management is not widely available. To develop such training, this study explored rheumatology clinicians' experiences of a variety of brief skills training courses to understand which aspects were helpful or unhelpful, and to identify the barriers and facilitators of applying the skills in clinical practice. Methods. 16 clinicians who had previously attended communication and self-management skills training participated in semi-structured interviews: 3 physicians, 3 physiotherapists, 4 nurses, 6 occupational therapists. Transcripts were analysed (ED) using a hybrid inductive and deductive thematic approach, with a subset independently analysed (SH, RG-H, RJ). Results: 3 overarching themes captured views about training undertaken and subsequent use of approaches to facilitate self-management. In 'putting theory into practice', clinicians felt that generic training was not as relevant as rheumatology-specific training. They wanted a balance between theory and skills practice, and identified the importance of access to ongoing support. In 'challenging professional identity', models of care and working cultures influenced learning and implementation. Training often challenged a tendency to problem-solve on behalf of patients and broadened clinicians' remit from a primary focus on physical symptoms to the mind and body interaction. In 'enhanced practice', clinicians viewed consultations as enhanced after training. Focus had shifted from clinicians' agendas to those of patients, and clinicians reported eliciting patients' priorities and the use of theoretically-driven strategies such as goal-setting. Conclusions: To varying extents, clinicians were able to learn and implement new approaches to support patient self-management after brief training. They believed that cognitive behavioural and communication skills to facilitate self-management enhanced their practice. To optimise self-management support in routine care brief, skills-based, rheumatology-specific training needs to be developed, alongside ongoing clinical supervision. Further research should examine patients' perspectives of care based on these approaches. © 2014 Dures et al.; licensee BioMed Central Ltd

The experience of people with rheumatoid arthritis living with fatigue: A qualitative metasynthesis

ObjectivesTo identify, appraise and synthesise qualitative studies on the experience of living with rheumatoid arthritis (RA)-related fatigue. MethodsWe conducted a qualitative metasynthesis encompassing a systematic literature search in February 2017, for studies published in the past 15 years, in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, SveMed, PsychINFO and Web of Science. To be included, the studies had to report the experience of living with fatigue among adults with RA. The analysis and synthesis followed Malterud's systematic text condensation. ResultsEight qualitative articles were included, based on 212 people with RA (69% women) and aged between 20 and 83 years old. The synthesis resulted in the overall theme A vicious circle of an unpredictable symptom'. In addition, the synthesis derived four subthemes: being alone with fatigue'; time as a challenge'; language as a tool for increased understanding' and strategies to manage fatigue'. Fatigue affects all areas of everyday life for people with RA. They strive to plan and prioritise, pace, relax and rest. Furthermore, they try to make use of a variety of words and metaphors to explain to other people that they experience that RA-related fatigue is different from normal tiredness. Despite this, people with RA-related fatigue experience feeling alone with their symptom and they develop their own strategies to manage fatigue in their everyday life.ConclusionsThe unpredictability of RA-related fatigue is dominant, pervasive and is experienced as a vicious circle, which can be described in relation to its physical, cognitive, emotional and social impact. It is important for health professionals to acknowledge and address the impact of fatigue on the patients' everyday lives. Support from health professionals to manage fatigue and develop strategies to increase physical activity and maintain work is important for people with RA-related fatigue

Treat-to-target in PsA: methods and necessity

© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. With increasing recognition of the high burden and impact of psoriatic arthritis (PsA) and the growing number of therapeutic options, there has been an intensifying focus on treatment strategy in recent years. In 2015, the Tight Control of Psoriatic Arthritis study confirmed the clinical benefit of using a treat-to-target approach in PsA. This randomised controlled trial found benefits in both arthritis and psoriasis disease activity as well as lower disease impact reported by patients, although participants allocated to tight control experienced a higher rate of serious adverse events. European and international recommendations support the use of a treat-to-target approach in PsA and have offered specific advice on how to do this using outcomes such as the minimal disease activity criteria. However, implementation of this approach in routine practice is low, with real-world data highlighting undertreatment as a result. Recent qualitative work with physicians in the UK has helped researchers to understand the barriers to implementation of treat-to-target in PsA. We now need to address these barriers, provide education and support to non-specialist clinicians in routine practice, and aid the translation of optimal care to the clinic

Development and testing of candidate items for inclusion in a new rheumatoid arthritis stiffness patient-reported outcome measure

© The Author 2017. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. Objective. To qualitatively develop and test a set of candidate items for a new RA stiffness patientreported outcome measure (PROM) that capture the patient perspective. This is an essential first step in PROM development, prior to quantitative development, assessment and validation. Methods. Focus groups further examined the previously developed stiffness conceptual model and explored the patient perspective regarding stiffness assessment. Data were analysed using thematic analysis. An iterative process of item development was then performed by the expert study team of researchers, patients and clinicians, based on the two qualitative datasets and informed by measurement theory and guidelines. Finally, these candidate items were tested using formal cognitive interview methodology and subsequently refined. Results. Sixteen RA patients from the UK participated in focus groups. Data confirmed the conceptual model of the RA patient experience of stiffness and provided insight into stiffness assessment, including suggestions regarding patient-relevant stiffness assessment categories such as impact, location and timing. These data informed the development of 77 candidate stiffness PROM items, including multiple formats for some. Eleven RA patients participated in cognitive interviews. Minor changes were made to items to enhance understanding and 32 items were removed, resulting in 45 candidate PROM items. Conclusion. Rigorous qualitative methodology and considerable patient involvement has underpinned items for a new RA stiffness PROM with strong content validity. Crucially, patient involvement broadened assessment beyond early morning stiffness duration, which may address existing PROM limitations. Items are now suitable for quantitative item reduction, structural development of the final PROM and validation

Patient experiences of brachytherapy for locally advanced cervical cancer: hearing the patient voice through qualitative interviews

Background Brachytherapy for gynaecological cancer is reported to cause pain, anxiety and distress with no clear guidance for optimising patient experiences. The aim of this study was to explore patient experiences of brachytherapy and views on improvements. Materials and Methods Semi-structured interviews were undertaken with patients who had received brachytherapy for locally advanced cervical cancer. Two cohorts were recruited: cohort one had recently had brachytherapy, cohort two were a year post brachytherapy. Four recruitment sites were selected, where brachytherapy is given in different ways, some with short day case procedures and others having one or two overnight stays with applicators in place. Consecutive patients were invited to interview. Participants were asked to retell their brachytherapy story, with views on their care and ideas for improvement. Interviews were audio-recorded, transcribed and data analysed following Braun and Clarke's method for reflexive thematic analysis.16 Results Thirty five interviews were conducted (20 in cohort one and 15 in cohort two). Participant's ages ranged from 28 to 87 years. The interview duration ranged from 22 to 78 minutes. Difficult and traumatic experiences were reported, including periods of severe pain and perceptions of poor care. However, some participants described positive experiences and what went well. Three themes were developed: 1) How I got through it 2) Unpleasantness, discomfort and the aftermath 3) Emotional consequences and trauma Some aspects of medium and long duration brachytherapy were found to be more problematic compared with short duration brachytherapy. Exploring experiences at one year post brachytherapy has provided insights into the long-lasting impact of brachytherapy experiences. Conclusion Hearing the patient voice has demonstrated that further work is needed to improve patient care in modern brachytherapy techniques using different regimes and durations, to minimise difficult and traumatic patient experiences. Study insights will inform future work to develop clinical care recommendations

Non-pharmacological fatigue interventions for patients with a primary brain tumour: A scoping review protocol

Introduction Fatigue is the most prevalent symptom for patients with a primary brain tumour (PBT), significantly reducing quality of life and limiting daily activities. Currently, there are limited options for managing cancer-related fatigue (CRF) in patients with a PBT, using non-pharmacological methods. The objective of this scoping review is to identify current and emerging evidence in relation to non-pharmacological CRF interventions for patients with a PBT. Methods and analysis Electronic databases OVID and EBSCO platforms: MEDLINE, EMBASE and CINAHL will be searched. In addition, PROSPERO, The Cochrane Library and ISI Web of Science will be searched. Trials registries CENTRAL and the International Clinical Trials Registry platform will also be searched for ongoing research. Inclusion criteria: studies from 2006 onwards, primary research on non-pharmacological interventions in patients with a PBT (>18 years). A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram will be utilised to summarise the screening process and results. Quantitative data will be analysed descriptively, while content analysis will be used for qualitative data. Findings will map the existing and emerging evidence on non-pharmacological interventions for CRF in patients with PBTs. This will provide insights into the extent and nature of the evidence in this evolving field, identifying gaps in knowledge and research priorities, and guide further investigations in this area. Ethics and dissemination Ethical approval is not required for this scoping review. Findings will be disseminated via relevant peer-reviewed journals, PhD thesis, conference presentations, and shared with relevant charities and health professionals

A survey of psychological support provision for people with inflammatory arthritis in secondary care in England

© 2014 The Authors. Objectives: The consequences of inflammatory arthritis can include depression, anxiety and low mood, reducing patients' quality of life and increasing pressure on the healthcare system. Treatment guidelines recommend psychological support, but data are lacking on the provision available. Methods: A postal survey concerning psychological support provision was sent to rheumatology units in 143 acute trusts across England. Nurses from 73 rheumatology units (51%) responded. Results: Overall, 73% rated their unit's psychological support provision as 'inadequate' and only 4% rated it as 'good'. Few units believed that psychological support did not fall within their remit (12%), yet only 8% had a psychologist in the team. Most units (68%) did not routinely screen patients to identify psychological difficulties. Referral to other service providers was reported in 42% of units, with 3% very satisfied with this provision. Within units, services containing elements of psychological support ranged from occupational therapy (81%) to psychology/counselling (14%). Psychological approaches used by team members ranged from shared decision making (77%) to cognitive-behavioural approaches (26%). The current barriers to providing psychological support were lack of clinical time and available training (86% and 74%, respectively), and delivery costs (74%). Future facilitators included management support (74%) and availability of skills training (74%). Conclusions: Rheumatology units viewed psychological support provision as part of their remit but rated their overall provision as inadequate, despite some team members using psychological skills. To improve provision, clinicians' training needs must be addressed and organizational support generated, and further research needs to define adequate psychological support provision from the patient perspective